A Guide to Inpatient Rehabilitation Services for People With Spinal Cord Injury

What You Need to Know Before Choosing an Inpatient Rehabilitation Center

After a spinal cord injury (SCI), people need rehabilitation (rehab) to help them reach the highest level of functional independence. Many health care facilities offer rehab programs, but a limited number have expertise and experience in SCI rehab care. Choosing a facility that specializes in SCI rehab will help people with SCI to achieve their best outcomes.

After SCI, you are first treated at an acute care hospital. The acute care hospital staff may not know about specialty SCI rehab programs or the needs of people with SCI. You can get rehab in a variety of settings, with varying levels of intensity and expertise. Not all settings can manage the complex needs of people with SCI. This guide provides information to help you choose a facility that is right for you or your family member.

It is important for you and your family member to be active in making all decisions related to your care, including choosing a rehab center. Insurance coverage may affect your choices. Other factors to consider:

• Whether the rehab center has special expertise in SCI
• How close you would be to home and your family and friends. (This is important, but carefully review the expertise of local rehab programs. It may be worth having rehab further from home if the program has special expertise in SCI.)
• Whether housing is available. (A few SCI rehab programs offer housing for family members.)
• Whether you would have the opportunity to participate in inpatient rehab with others who are also adjusting to SCI. This may help you learn new skills and adapt to your SCI.

Inpatient Rehab Services

Why is specialized SCI inpatient rehabilitation important?

People with SCI have unique medical and rehab needs that are best met when you receive care provided by a specialized team of clinicians with experience in SCI rehab. Your rehab will be provided by a team that is made up of different rehabilitation specialists (such as physical, occupational, and speech therapists). Each specialist has their own focus. They work together with you toward the best possible outcomes and help you get the most from any muscle function you get back.

What SCI Rehab Services Should I Expect?

Rehab is team-based care that addresses changes in function due to SCI. You will work to maximize your physical function and independence as you learn new ways to do some activities of daily living. Your rehab team will manage your medical needs. They will also educate you about your SCI and how to prevent secondary conditions. Rehab also includes mental health services to help you adjust to changes after SCI.

Your rehab team will work with you to come up with achievable, short-term goals to work on during your stay. These goals will include a realistic idea of what you should be able to do with the function you have after SCI. These goals may change over time if you regain more function. Your rehab team will work with you to tailor your rehab to your specific needs.

Specialists who may be involved in your inpatient rehab include the following:

• Physicians: The physician leads your treatment team and manages your medical care. Often, the physician who leads the team is a physiatrist (fiz-EYE-ah-trist), which is a physician who specializes in rehabilitation. The physician who directs your care must have expertise and experience in treating people with SCI. Some physicians complete an accredited fellowship training program in SCI medicine. In this program, they focus on care for patients with SCI. Board certification in SCI medicine is recommended by both the Academy of Spinal Cord Injury Professionals and the American Spinal Injury Association. The physician plays an important role in the care of people with SCI and management of secondary conditions throughout their lives.
• Rehab nurses educate patients about bowel and bladder management and how to prevent complications, such as pressure injuries (pressure sores). They also educate patients about any medicines they take. Rehab nurses reinforce the treatments and techniques you learn during therapy sessions. Some registered nurses have a rehab certification.
• Physical therapists (PTs) and occupational therapists (OTs) work together to help you regain your strength and stamina and learn new ways to complete daily activities. These activities might include eating, bathing, getting dressed, transferring from one surface to another (like from a bed to a wheelchair), using a wheelchair or walking. They help you learn how to use devices, durable medical equipment (DME), and assistive technology to maximize your physical mobility. OTs and PTs also work together to recommend modifications for home, school, or work to maximize your functional ability in those spaces.
• Recreation therapists provide adaptive sports and recreation opportunities to help improve your health and well-being. They also help you reconnect with your community.
• Psychologists help you and your family work on issues associated with your emotional reaction to the SCI, including adaptation, behavioral and mental health as well as health management issues. They can also help to identify problems with learning and memory and work with patients and their families with managing these issues both in the inpatient setting and after discharge.
• Case managers work with you to review and update your discharge plan. They help coordinate appointments, services and supplies after discharge. With other members of your rehab team, they help you understand your health care benefits and help you to navigate insurance issues as they come up. Insurance companies may have their own case managers who are separate from hospital-based case managers. Case managers may be nurses, social workers or other healthcare professionals.

Other specialists who may be part of your care at an inpatient rehab program include:

• Dietitians can help address your nutritional needs. They can make sure that your body is getting all the nutrients it needs to promote healing and maintain skin integrity, improve bowel function, and maintain a healthy weight.
• Respiratory therapists assess, prevent and treat problems with breathing, under the direction of doctors. They will help to maximize your breathing capacity and, if applicable, manage your ventilator. See Table 1 for more information about ventilators.
• Urologists are physicians who specialize in issues that affect the urinary tract. A urology assessment and bladder management are key parts of your medical care after SCI. Urologists may be able to provide a urology assessment and explain your options for bladder management, sexuality, and fertility. The SCI rehab program should have access to a urologist with SCI expertise who can consult on your bladder management needs.
• Speech-language pathologists (SLPs) treat issues with swallowing or speaking after SCI. They also recommend technology to improve your communication if your speech is affected. SLPs have expertise related to swallowing assessments and can recommend foods and drinks that you can safely eat and drink.
• Other physicians with specialties related to SCI. These may include specialists dealing with bladder management, sexuality and fertility (urologist for men & ob/gyn for women), bone or joint injuries (orthopedic surgeons), surgeons who operate on the spinal cord (neurosurgeon).

Many rehabilitation programs offer other services to help people with SCI get back to their communities and do the things that are important to them. Some of these services include:

• Outpatient medical care. Some SCI rehab facilities offer outpatient medical care services for people with SCI across the lifespan. Physiatrists with SCI expertise treat secondary conditions that occur after SCI, such as spasticity, bladder and bowel management issues, and more.
• Assistive technology. These are items that are used by people with disabilities to increase, maintain, or improve their functions. Such technology may be low or high tech and can increase independence and help people control their environments. Examples of low-tech assistive technology solutions include pen holders, mouth sticks, and adapted utensils. High-tech assistive technology options include voice recognition software and customized power wheelchairs. At some rehab centers, specially trained therapists educate patients and family members about the latest assistive technology devices.
• Wheelchair seating clinics.Many SCI rehab facilities offer high-quality wheelchair seating clinics. These clinics help each patient find the best wheelchair and seating components to be mobile and prevent complications.
• Vocational rehabilitation services. These programs offer services to help people continue with their education or work. They help people identify career interests and skills, get education and training, find and apply for jobs, and organize accommodations at work.
• Adaptive fitness, wellness, sports, and recreation programs. Some rehab facilities offer adaptive fitness, wellness, sports, and recreation programs. These may be inpatient or outpatient services.
• Peer support. High-quality rehab programs often provide peer support services. Peer mentors who live with SCI share their experiences to help you adapt to the daily experience of living with SCI. Some rehab programs also offer peer support groups for people with SCI and their family members.
• Sexual health. Rehabilitation experts can help address sexual function needs.

How to Find an Appropriate Inpatient Rehabilitation Facility

You may receive inpatient rehab services in a freestanding rehab hospital or a rehab unit within a larger medical center. Before you leave the hospital, you should know what type of rehab center you or your family member are moving to because this affects your ability to receive the services described above. There are two major types of facilities that provide specialized inpatient rehab:

Inpatient Rehabilitation Facilities (IRFs)

IRFs provide intensive rehabilitation services for people who have limitations that affect their ability to perform activities of daily living. Such activities include bathing, dressing, eating, using the toilet, and walking. To be eligible for admission to an IRF, you need to meet the following criteria:

• Limitation in activities of daily living
• Your medical condition is stable, and in general you can take part in at least 3 hours of therapy, 5 days per week (or 15 hours of therapy over 7 days).
• You must take part in two or more therapies, one of which must be occupational therapy or physical therapy.
• Your condition needs to be supervised by a rehab doctor.

You are expected to make some measurable and reasonable improvements in function during your rehab program. These improvements could include increased function or being able to adapt to your injury by finding new ways to do important activities. Admission to an IRF should not be denied solely because you may not be expected to return to a prior level of functioning.

SCI-Specialized Long Term Acute Care Hospitals (LTACHs)

LTACHs manage medically complex problems, such as respiratory issues that need ventilator management or severe pressure injuries (pressure sores or bedsores). Patients in LTACHs typically need longer hospital stays and often come directly from an intensive care unit. LTACHs may also offer respiratory, speech, physical, or occupational therapies, but there are no daily therapy requirements.

While there are a few LTACHSs that offer specialized SCI rehab, most LTACHs do not offer specialized SCI rehab and may provide fewer than 3 hours of therapy per day. If you are being advised to go to an LTACH, it is very important to make sure that the LTACH you will go to has specialized SCI expertise and will provide therapy time that is comparable to or exceeds what you would receive in an IRF. To determine this, look for signs that the LTACH has special expertise in SCI, such as a SCI Model Systems designation and/or a CARF accreditation in an SCI Program of Care (see below).

Other Health Setting: Subacute Rehab Facilities, such as Skilled Nursing Facilities (SNFs)

There are many SNFs in the United States, but they rarely specialize in SCI rehab services There are no daily therapy requirements in SNFs. It is important to ask the facility about their experience with treating patients with SCI; what rehab therapy, physician, and nursing services you can expect; and if they offer any specialty programs.

LTACHs and/or SNFs often serve as a bridge to or from IRFs (between an acute hospital and an IRF or between an IRF and home). A temporary stay in an LTACH might be needed if you have a medical issue (such as a fracture or skin sore) that needs time to improve before you would be able to participate fully in rehab. Admission to an LTACH or an SNF may also affect your ability to transfer to other types of settings. Ask your medical team about the reasons why an LTACH stay is being recommended. If the recommended LTACH does not have a specialized SCI rehabilitation program (as described above), speak with the team to make sure you will have the opportunity to transition later to another specialized SCI inpatient rehab program to reach your goals.

To help you find an appropriate rehab setting look for special designations or accreditations

Examples include:

• SCI Model System Centers. These centers provide comprehensive specialty services from the time of injury through rehab and reentry into community life. These centers also take part in SCI research. Currently there are 18 SCI Model System Centers (https://msktc.org/sci/model-system-centers) in the United States.
• CARF International (formerly the Commission on Accreditation of Rehabilitation Facilities). CARF accredits rehab programs that meet specific standards of care. This includes general inpatient rehab programs that meet CARF standards. CARF also offers specialty accreditation for SCI rehab programs. The CARF directory lists CARF-approved SCI programs. Please see their special note providing guidance for finding SCI programs. SCI-accredited programs meet high standards and provide services across the life span. The CARF directory also includes pediatric rehab programs. The CARF website can be found at: http://carf.org/providerSearch.aspx.

Special Rehab Considerations

A few special considerations may help you to choose an appropriate rehab facility (see Table 1). It’s important to consider your support system and your designated advocates, who can act on your behalf as you decide about moving to a different facility.

Table 1. Special Rehab Considerations

Population	Special Rehab Considerations
Children	Some rehab facilities have pediatric or adolescent units. Some children’s hospitals have rehab units. Check how many children with SCI any potential rehab facility treats each year. Rehab programs should provide services that consider the child’s growth and development. The rehab team should include a pediatric physiatrist. Parents or guardians of children with SCI should be equal partners in the rehab and education processes.
Ventilator users	If you need ventilator services, please ensure that the program you are considering has those services. Ask how many patients with SCI they treat each year and if they have specific programs or protocols for SCI ventilator management. Again, ask your SCI medical team about your overall care plan. Ask your SCI medical team if you are a candidate for more advanced interventions such as a diaphragm pacing system (DPS) or phrenic nerve pacing system. A DPS is a battery-powered device that uses electricity to directly cause the diaphragm muscle (the major muscle used in breathing) to contract. A phrenic nerve pacing system uses electricity to stimulate the phrenic nerve, the nerve that travels from the spinal cord to the diaphragm muscle. Either may provide part- or full-time respiratory support in place of a ventilator. If you can’t find an SCI rehab facility that cares for ventilator users in your state, reach out to an SCI organization for help finding such a facility (see Additional Resources section below).
Seniors	Older individuals with SCI should be considered for admission to an inpatient rehab hospital. The rehab team may include a geriatrician—that is, a doctor who specializes in the health and care of older individuals.
Uninsured	If you don’t have insurance, work with your case manager to determine your insurance options. (See “Where to Go for Help with Insurance and Other Issues” in the Additional Resources section below).

Additional Information

If you can’t find an SCI rehab facility, reach out to an SCI organization for help. These include United Spinal Association (https://unitedspinal.org/) or the Christopher & Dana Reeve Foundation (https://www.christopherreeve.org/).

Several guidelines suggest questions that you can ask of rehab facilities that you’re considering (see the Additional Resources section below) to help you learn about their experience with SCI care.

Discharge From Inpatient Rehab

Discharge planning often begins when you are admitted to inpatient rehab. Such planning includes a review by members of your rehab team of your discharge location and the physical accessibility of the location.

Preparing for discharge can help reduce anxiety. Your hospital case manager or discharge planner will help you and your family prepare for discharge and identify resources in your community (e.g., finances, home care, transportation, and community service organizations) that can help you function well in your community. This often includes information about government services such as Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, Medicare, and other disability benefits. Your local Center for Independent Living (CIL) can help you learn about benefits, programs, and services for people with disabilities in your geographic region. CILs are private, nonprofit corporations that provide services to people with disabilities to support community living and independence.

You will be ready for discharge from inpatient rehab when you are medically stable and no longer need close supervision by a doctor. The range of a length of stay in inpatient rehab is typically 2-5 weeks. Length of time in rehab will vary based on the neurological level of your injury, personal circumstances, and many other factors. With input from your clinicians, you may decide to advocate for more time in inpatient rehab. At discharge, you will have learned about your health condition, how to manage and prevent secondary conditions, and how to operate medical equipment and assistive technology. You may have met the inpatient rehab goals developed by you and your team; however, for most people, rehab continues after discharge in an outpatient clinic or home setting.

Where to Go for Help With Insurance for Your Inpatient Rehab Needs

Under the Patient Protection and Affordable Care Act (ACA; see References), you have the right to appeal decisions made by health insurance plans. The ACA’s Patient’s Bill of Rights details a set of patient protections that apply to health coverage. To learn about your rights, visit: https://www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/aca-new-patients-bill-of-rights. Regardless of where you live or the type of insurance you have, the following guidance may help:

• You have the right to know why a claim or coverage for your inpatient rehab needs was denied.You have the right to file an appeal with the insurance company. If your case is urgent, your insurance company must speed up the process.
• Insurers must provide a description of available internal appeals and external review processes. This includes how to start an appeal.
• When you need health coverage for out-of-network providers or facilities,you need to explain that no facilities within the insurer’s network have the needed training or expertise to treat your condition. Your doctor may need to provide a letter of medical necessity to explain this to the insurance company.
• If you can’t work things through an internal appeal, you have the right to take your appeal to an independent third party for review—that is, you can engage, through you provider, in an Administrative Law Judge process. There are also protection and advocacy agencies across the country who can help you with other access issues. The Administration for Community Living (ACL) has information about state protection and advocacy systems (P&As). Click here to find your P&A agency (https://acl.gov/programs/aging-and-disability-networks/state-protection-advocacy-systems).
• Many states offer services to help manage health insurance denials through a Department of Insurance or Consumer Assistance Program (https://www.cms.gov/CCIIO/Resources/Consumer-Assistance-Grants).
• If you are uninsured, see the “Uninsured” section of Table 1.

You can also reach out to your state legislature and ask for help. If you apply for Medicaid, work with constituent services at your state senator’s or state representative’s office to help speed up your application process: https://www.congress.gov/state-legislature-websites. For questions or to get insurance, visit HealthCare.gov or call 1 800-318-2596.

Additional Resources

• Consumer Guidelines (American Spinal Injury Association): https://asia-spinalinjury.org/wp-content/uploads/2018/11/Consumer-Guidelines-v.-03082019.pdf
• CARF International: Find a Provider (Note: Use the advanced search for SCI rehabilitation programs): http://carf.org/providerSearch.aspx
• Guidelines for Selecting a Rehabilitation Facility (United Spinal Association): https://askus-resource-center.unitedspinal.org/index.php?pg=kb.page&id=1717
• Engaging With Insurers: Appealing a DenialEngaging With Insurers: Appealing a Denial (Patient Advocate Foundation): https://www.patientadvocate.org/wp-content/uploads/Navigating-the-insurance-appeals-guide-pages-1.pdf
• Find Your Protection and Advocacy Agency (Administration for Community Living): https://acl.gov/programs/aging-and-disability-networks/state-protection-advocacy-systems):
• A Patient’s Guide to Navigating the Insurance Appeals Process (Patient Advocate Foundation): https://www.patientadvocate.org/wp-content/uploads/Navigating-the-insurance-appeals-guide-pages.pdf
• 6 Strategies to Navigate Your Insurance Provider’s Approvals Process (New Mobility, United Spinal Association): https://newmobility.com/6-strategies-to-navigate-your-insurance-providers-approvals-process/
• Affordable Care Act, Patient’s Bill of Rights: https://www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/aca-new-patients-bill-of-rights
• Living With Spinal Cord Injury - Model Systems Knowledge Translation Center: https://msktc.org/sci
• Medicare Benefit Policy Manual, Chapter 8—Coverage of Extended Care (SNF) Services Under Hospital Insurance: https://www.hhs.gov/guidance/document/benefit-policy-manual-chapter-8-extended-care-coverage

Consumer Organizations

• Directory of Centers for Independent Living (CILs): https://www.ilru.org/projects/cil-net/cil-center-and-association-directory and https://www.ilru.org/projects/silc-net/silc-directory
• Christopher & Dana Reeve Foundation: https://www.christopherreeve.org/:
• Paralyzed Veterans of America: https://pva.org/about-us/mission-statement/:
• United Spinal Association: https://unitedspinal.org/
• United Spinal Association Help Desk: https://askus-resource-center.unitedspinal.org/index.php

References

American Spinal Injury Association. Consumer guidelines. https://asia-spinalinjury.org/wp-content/uploads/2018/11/Consumer-Guidelines-v.-03082019.pdf

Camicia, M., Black, T., Farrell, J., Waites, K., Wirt, S., & Lutz, B. (2014). The essential role of the rehabilitation nurse in facilitating care transitions: A white paper by the Association of Rehabilitation Nurses. Rehabilitation Nursing Journal, 39(1), 3–15.

Center for Medicare Advocacy. (2013, May 30). Frequently asked questions (FAQs) regarding the Jimmo v. Sebelius “Improvement Standard” settlement. https://medicareadvocacy.org/jimmo-v-sebelius-the-improvement-standard-case-faqs/

Centers for Medicare & Medicaid Services. (2021, August 6). Chapter 8: Coverage of extended care (SNF) services under hospital insurance. In Medicare benefit policy manual (CMS Publication No. 100-02). https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Downloads/bp102c08pdf

Emerich, L., Parsons, K. C., & Stein, A. (2012). Competent care for persons with spinal cord injury and dysfunction in acute inpatient rehabilitation. Topics in Spinal Cord Injury Rehabilitation, 18(2), 149–166.

Greenwald, B. D. (2021). Traumatic brain injury and acute inpatient rehabilitation. Model Systems Knowledge Translation Center (MSKTC). https://msktc.org/tbi/factsheets/traumatic-brain-injury-and-acute-inpatient-rehabilitation

Klebine, P., Smitherman, O., Gernenz, L., & Baldessari, J. (2020). Understanding spinal cord injury: Part 2—Recovery and rehabilitation. Model Systems Knowledge Translation Center (MSKTC). https://msktc.org/sci/factsheets/Understanding_SCI_Part_2

National Spinal Cord Injury Statistical Center. (2022). Traumatic spinal cord injury facts and figures at a glance. https://msktc.org/sites/default/files/SCI-Facts-Figs-2022-Eng-508.pdf

National Conference of State Legislatures. (2011, February). Right to health insurance appeals process. https://www.ncsl.org/documents/health/HRHealthInsurApp.pdf

Patient Advocate Foundation. A patient’s guide to navigating the insurance appeals process. https://www.patientadvocate.org/wp-content/uploads/Navigating-the-insurance-appeals-guide-pages.pdf

Patient Protection and Affordable Care Act of s2010, Public Law 111-148, 124 Stat 1119 (2010).

Authorship

A Guide to Inpatient Rehabilitation Services for People With Spinal Cord Injury was developed by Jane Wierbicky, RN, Alexandra Bennewith, MPA, Anne Deutsch, PhD, Jeanne M. Zanca, PhD and members of United Spinal Association’s Maximizing Rehabilitation Outcomes Special Interest Group, in collaboration with the Model Systems Knowledge Translation Center.

Source: The content in this factsheet is based on research and/or professional consensus. This content has been reviewed and approved by experts from the Spinal Cord Injury Model Systems (SCIMS), funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), and United Spinal Association. The content of the factsheet has also been reviewed by individuals with SCI and/or their family members.

Disclaimer: This information is not meant to replace the advice of a medical professional. You should consult your health care provider regarding specific medical concerns or treatment. The contents of this factsheet were developed under grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant numbers 90SI5019 and 90DPKT0009). NIDILRR is a Center within the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS). The contents of this factsheet do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the federal government.

Recommended citation: Wierbicky, J., Bennewith, A., Deutsch, A, Zanca, J. M., & Maximizing Rehabilitation Outcomes Special Interest Group. (2023, March). A guide to inpatient rehabilitation services for people with spinal cord injury. Model Systems Knowledge Translation Center (MSKTC). https://msktc.org/sci/factsheets/guide-inpatient-rehabilitation-services-people-spinal-cord-injury.

Copyright © 2023 Model Systems Knowledge Translation Center (MSKTC). May be reproduced and distributed freely with appropriate attribution. Prior permission must be obtained for inclusion in fee-based materials.